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A Reflection from a Father

From Mark:

My how things change.

At first, we said we wanted a boy. Nope.

Then, we said we will love our girl, but we hope she’s not too frilly. Nope.

We also said, just let her be healthy. Nope.

All the standard prenatal tests were clean. The pregnancy was without flaw. The birth was so wonderful. I cast my eyes upon my precious daughter for the first time and then held her lovingly with Kate as our hearts and eyes swelled with love.

SMA began to manifest at around three months when we noticed Getty wasn’t meeting her movement milestones. We attributed it to slow growth and a larger than average head size.

At age four months, on Friday, July 30, 2010, one year ago today, the floor dropped out from under us.

Every hope we had for Getty disappeared in an instant when the words fell out of the neurologist’s mouth,

“Spinal Muscular Atrophy . . .”

“Type 1 . . .”

“Degenerative . . .”

“Two years.”

That’s it. She has a life expectancy of two years. Not only that, but we felt we have to spend the rest of her short life bearing the cruelty of just watching her strength waste away as this disease robs her of function, robs us of our lives as a family, robs us of dreams for Getty of playgrounds, sports, school, dances, dating, and maybe even holding her hand and walking with her as she starts another stage of her own life with someone she loves.

I recall the silence and shock after we listened to those words in the neurologist’s office. Kate had just told Getty moments before that she can’t leave us, only now to be told things would be otherwise. The look on Kate’s face at that moment was almost indescribable . . . panic, sorrow, grief, despair, horror. No words could or needed to be said.

We managed to get home. That weekend, we cried and cried. We hugged each other. We hugged and kissed Getty not knowing how many more hugs and kisses she would ever get. Thankfully, we managed to get out of the house and silently reflect in the park.

As some of the shock wore off, we wondered what we would do. Getty is completely unaware of SMA. She has no idea what she should be able to do. Unlike us, she has no sorrow or sense of loss. She is happy. Kate and I made a simple vow: keep her happy. She deserves nothing less.

Shortly after D-day, I wrote, “Our poor baby girl is going to grow weaker and leave us within 2 years, and there is nothing we can do.” I also wrote, “All we can really do is love each other as much as possible in the time we have left with our baby girl.” If all of that is true, then since she is age 16 months now, well . . . you can do the math.

This takes me back to my original thought in this post: My how things change.

We hear over and over in the SMA community how doctors often tell newly diagnosed SMA families to “take your child home and love him because there is nothing you can do.” Sadly, in the weakest cases of SMA, there may be little or nothing anyone can do for now. However, as we have learned, in Getty’s case and in cases like hers, there is so much we can do to provide Getty the greatest quality of life while keeping her as healthy as possible, living up to our solemn vow to keep her happy.

Getty loves and laughs. She clicks and coos. She smiles and sings. Best of all, she hoots. She is expressive and smart. She is wise and peaceful, scrappy and strong. She inspires without speaking and motivates without moving. She can hardly lift her finger, yet she moves the world.

Her deep and soulful gaze speaks to me. She tells me she is happy. She tells me she has needs. She asks me for help. She asks me to love and provide. She asks me to teach, to sing, and to fight. I know she understands me though my gaze, “Don’t worry, honey, Daddy is here.”

Kate and I have learned and changed so much together in the past year. That change is more profound than people may think, but I don’t expect anyone to truly understand all it entails. I don’t expect anyone to comprehend our newly found focus, priorities, and motivations. Much of it is a change in spirit, so it is difficult to convey in words, though when I talk to another SMA Dad, I feel a deep and peaceful bond, despite the mayhem thrust upon our lives.

We have learned to advocate for Getty’s care and fight for her needs. We have learned to be her voice. We have learned to plod ahead in the face of ruin. We have learned not to yield to a system of rejection and denial. We have learned to convert despair into hope. We have learned to embrace greater depths of love and humanity. We have learned to better serve a greater purpose.

There is so much more to Getty and to SMA than to “take her home and love her because there is nothing anyone can do.” We have learned and we know better.

In the past year, I have gone from “Dad” to “SMA Dad.”

My how things change.


A Reflection From A Mother

From Kate:

I have had an entire year to think about this day, the anniversary of Getty’s diagnosis.

I remember what we were doing that day before her 4 month check-up at noon. I remember what I was wearing, I remember packing the small diaper bag, I remember the weather outside, I remember everything.

I remember the pediatrician appointment being rather routine. I remember the nice discussion we were having with our doctor about Getty. I can’t stress how routine it was. And in a moment right before we left, the doctor made one more quick check on how Getty was bearing weight on her legs and the entire game changed. She did another test with her reflexes and then another to look into her mouth to see the movement of her tongue, all the while Mark and I just sat back as parents not thinking anything was wrong. Then for some reason I started to look at our doctors facial expression. She started to have this really intense look on her face and then it seemed to turn to concern. In a way I was trying to ignore her because in my mind nothing could be wrong with Getty. We hadn’t noticed anything wrong so how could she find something we were not already privy to.

She finished her exam and sat back down in her chair. She paused and then told us that she was concerned. “I don’t want to tell you what I think it is, because you both will go home and google it. I hope I am totally wrong and you get mad at me later for adding such stress to the situation, but I am going to make an appointment with a neurologist to have Getty seen today.”

As I write this, those emotions just come back in a wave of terrifying proportions. We left the room, Getty snug in her car seat and we made the trip home only to wait for the next appointment. I laid Getty down in our bed and we just snuggled together. I could not restrain myself, I cried and cried and cried. I didn’t know what I was crying about really, just the notion that something wasn’t right was terrifying me. Getty looked like a normal 4 month old child. What on earth could it be? I stopped thinking and concentrated on her sweet little face and I just started talking to her. I started to bargain with her, like she in some way had the power to change the outcome of this situation. I told her that she couldn’t leave me. I begged her not to leave me. Her sweet blue eyes just looked back at me with such comfort. I held her for hours until it was time to go to the next appointment. 4 o’ clock came and we were sitting in another doctor room. The neurologist came in and did similar tests as our pediatrician had done. He sat back in his chair as our pediatrician had done and then he told us what he thought. Before he spoke though I can only imagine what was going on in his head. How do you phrase a sentence like this so a family understands but in the same breath is manageable to digest? He did pause for some time and I remember thinking to myself that he doesn’t think we could handle that maybe Getty won’t be able to walk? “Does he think we are shallow enough to not handle news like that, bring it doc!” I was already getting defensive and I had no idea what he was going to say.

“Getty has Spinal Muscular Atrophy. It is a genetic progressive disease that targets the muscles. I believe she has type I which means it is the most aggressive.” The room was silent. No crying, no screaming, no nothing, we were in complete shock. The only thing that I was able to muster up was, “how long do we have?” His quiet voice responded with, “1-2 years on average.” More staring and more silence continued, all the while Getty was laying on the bed gurgling sweet coos to us.

He offered the same consolation, “I hope I am wrong, and I hope you call me later and yell at me for being so wrong.”

I was never able to make that call because he was right, Getty had SMA and Mark and I had given it to her because we were carriers. We unknowingly gave Getty a terminal disease. We gave Getty a disease that will continue to weaken her body. We gave her a disease that will compromise her swallowing. We gave Getty a disease that will compromise her breathing. We gave Getty a disease that currently has no viable treatment or cure. We did this!

So now what on earth does a family do? How on earth does one digest this kind of news? How on earth do you move on with life?

Well I guess the answer is, you just do and that is what we did. You get through one day, the next might not be so great, but the next day might.

Our lives will never be the same since July 30th, 2010.

I wrote soon after her diagnosis a phrase that I like to reflect on from time to time. “What can I say, life as we know it has changed forever. For better or for worse, we will stand together. I am honored to be mommy to the best little girl in the world. Miss Getty we love you!”

This helps me get through some very difficult days. But that is what we are doing, standing together through good and bad. No day is similar to another, there is no security that tomorrow will be here, so we just live everyday like it is seriously our last. It is although, no longer doom and gloom. In fact I would argue that I have never lived life with such fulfillment as I do now as a mother and as a human being. I would have obviously wanted a different outcome, but now I wonder if that would have been possible without one? I am still searching internally with that answer, perhaps I will never know.

What I know for sure is that the love I have for Getty is a love I never thought I was capable of. She makes my soul whole. She has the ability to comfort with the most gentle coos and touches. She is so thoughtful and such a strong-willed little girl. I am so in awe of her power and zest for life. How can such a little being be so wise and teach her parents such life lessons at such a young age? I thank her every day for choosing me as her mommy. I am so lucky.

I hope for those reading this post take in to account a couple of things. SMA does not care who you are. It doesn’t care if you decorated your nursery with cute bedding and beautiful furniture. It doesn’t care if you had dreams of your child one day following in your footsteps and kicking around the soccer ball. It doesn’t care if you were subconsciously dreaming about future milestones;  high school, college, wedding. All it does is take. 1 in 40 are carriers. That is over 10 million people alone in the United Sates. SMA can certainly be anyone’s reality. A simple carrier blood test can give you the knowledge you need to make the best decision possible for your family. It is seriously as simple as a blood test. Most doctors don’t even know what SMA is so you can’t assume they will offer this test to you, you need to ask, even if there is no family history. There usually never is.

Having said that I believe it is a choice to allow SMA to defeat you. I am in constant battle with our SMA monster that lives in our home. He is here and lives among us, but he does NOT define Getty in any way shape or form. Getty is, Getty. She is a robust little lady who loves life. Perhaps it is not the path I would have wanted for Getty, but it is what is, and we fight everyday for her. We believe that there is hope for her life and for other children with SMA. You have to hope. We believe we will see a treatment and/or cure in her lifetime. We believe that SMA will become more mainstream and lose its “orphan disease” title. There is nothing “orphan” about the #1 genetic killer of young children. Whomever designated SMA with that title certainly got their facts wrong and has done a huge disservice to this disease. Orphan, to me, implies insignificant and there is nothing insignificant about SMA.

On the eve of National SMA Awareness Month, I want to thank everyone that has helped spread the word about SMA. Whether you have received a Tell 5! package or you have learned from SMA by reading our blog or other great SMA non-profits and families around the US, I think it would be safe to say that we all thank you.

No family should EVER be given the diagnosis of SMA. No family should be given the dire statistics of 1-2 years of life expectancy. No child should have to have their respiratory compromised due to a degeneration of muscles.  We need to keep fighting for awareness and we need to keep fighting for a cure. Getty and her friends deserve nothing less. That is why we fight so hard. I want to see Getty attend high school, I want her to graduate from college, I want her to get married, I want her to have a full life and an extended one full of experiences. Getty deserves that.

Getty said “dada” the other day and Mark and I were over the moon. Will more words follow? We have no idea, but we are so thankful for “dada.”